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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.


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  1. Hi Purdue, You've gotten some good advice already.  That functional doctor may help some people, but you are better off to stick with a traditional GI for now IMHO.  You can do some studying and learning on your own by sticking around this forum and reading threads and articles and asking questions.  There is a lot of combined experience among the members. I am not sure where you live, but another thing you can try is finding a local support group for celiac disease.  There may be one close to you that can offer information and support.  Sometimes hospitals sponsor groups and there are also national celiac support groups.  Here is an article on support groups in the US: The usual diagnostic flow is to have the celiac antibodie blood tests, and then an endoscopy to take 5 or so biopsy samples.  The endoscopy is done by a flexible tube they insert through the mouth.  They discourage singing during the endoscopy.   It's an outpatient procedure. I was gluten-free for 3 months before I saw my GI so I didn't have the endoscopy.  But lots of people have had it.  Sometimes they report a sore throat from the procedure. Sometimes there are research trials for celiac treatments and they only want people who have been through the full diagnostic process.  So if you think participating in a medical trial is something you'd want to do that is a consideration. In Britain I think they had a requirement for diagnosis to get a tax consideration on buying gluten-free food some time ago.  I don't know if that is still true though. Sometimes people find it hard to stick to the gluten-free diet without a diagnosis.  A diagnosis might help in the willpower department. If you did go gluten-free now and decided to get tested later they recommend 12 weeks of eating gluten before the endoscopy.  That can be tough to do if you are sick every time you eat gluten.  So it's easier on most people to do the testing up front. But you are right, there is no absolute requirement that you get fully diagnosed to go gluten-free.  It's a lifetime commitment so that may be easier if you know for sure.  Or maybe not.  Some people have such bad symptoms that resolve on a gluten-free diet that it doesn't matter to them if a test shows celiac or not. Lots of info can be found at the University of Chicago celiac center site.
  2. I think it might be worthwhile to call the GI's office and talk about their plan now.  Find out if they can setup the endoscopy now, rather than wait until your appointment.  Tell them what your positive result was, or make sure they have a copy of the test done and the result.  If they want another celiac antibody test panel, you might be able to get that done ahead of time.
  3. Hi LeeJ, It's best not to start the gluten-free diet before being tested.  The celiac disease tests are for an immune reaction.  If you have reduced the antibodies by stopping eating gluten for a while then the tests aren't accurate.  You said you were on a ketagenic diet and that symptoms began after resuming a carby diet.  You also said you had symptoms after eating gluten.  Those 2 things seem to indicate a food reaction of some kind. There are many different symptoms that celiac disease can cause, there are around 300 possible symptoms.  Some people have no symptoms and yet they still have celiac disease.  So the best thing is to go ahead and get tested.  The initial test is a blood draw to check for elevated levels of certain antibodies to gliaden, a protein in wheat gluten. Another thing that might help is to consider conditions your relatives might have had.  Celiac disease is related to genetics, and so it can run in families.  However the genes are also linked to a variety of other auto-immune diseases.  This article link describes some of the related conditions.   What this means is that one of your relatives or you might have some of these conditions.  So if there is a history of any of these related conditions in your family, it could indicate a higher chance of celiac disease related genes.  They say auto-immune diseases run in packs, but they also run in families. You can also have a gene test done, which tells you if your body is likely to develop the condition, not that you have it now. People have posted in the past about problems with gaining weight.  Often doctors assume you have to be skinny  to have celiac disease, but that is not always true.  Some people gain weight with celiac disease, which seems counter-intuitive. The auto-immune reaction in celiac can target many different organs in the body.  Sometimes people have skin problems, nerve damage, liver damage, joint damage, thyroid damage, hair loss, etc. etc.  The symptoms are not always primarily digestive symptoms, but some other seemingly unrelated body organ.  So it can be very tricky to diagnose celiac disease from symptoms alone.  It sounds to me like you are having some lymphatic system damage.  I'd definitely want to get tested for celiac disease if I were you.  You don't want to let that kind of damage continue. There is a Newbie 101 sticky at the top of some forum sections.  It may help answer some questions. Welcome to the forum Leej! I hope this helps some.  
  4. Forum Upgrade Bug Reports

    OK, well back track for me.  I upgraded to 64 bit Firefox and now the reply editor works much better.  Thanks anyway Scott!  Sorry for the hassle.
  5. Hi Gateway, Well, I am sure you didn't come back to the forum for no reason.  It seems to me you know somehow that gluten is a problem for you.  Tests or not.  Some people never test positive on the standard antibody tests, but they still have celiac disease.  It's not necessarily an easy condition to diagnose.  If celiac were easy to diagnose, maybe there would be a lot less than 85 to 90 % undiagnosed celiacs walking around.  It doesn't help that some doctors won't test for it either. You can get the blood antibody tests again, it may show something now.  Or it may not.  But you can still go gluten-free anyway.  Just don't expect everything to be perfect in a few weeks.  It can take months or years to fully recover, depending on age and the amount of damage etc , etc.  Sticking with the gluten-free diet is the only way to get better though, if it is celiac disease.  So you may as well stick with it this time.  Not for 8 or 9 months, but for 3, 4 or more years.  For life if it is celiac. There is plenty of other food to eat that is nutritious and gluten-free.  Stick with meats, nuts, veggies and fruit and you should be fine.  Try to mix it up some though and not eat the same things all the time.  You may need to stop dairy for a few months also. Going gluten-free is a great thing for people with celiac, and keep make our lives /heath much better.  It may take some time, but getting healthy again is worth it. You can do it!  
  6. Forum Upgrade Bug Reports

    Thanks Scott!  I forgot to say I am using Windows 10 also.
  7. I don't know about the Adam's peanut butter.  But I eat Jif brand "Natural" peanut butter with no problem.  If it is a question in your mind, maybe try a different brand for a while and see if you notice any difference?  I tend to think the more natural type peanut butters are probably a safer bet.
  8. I'm going crazy

    Good advice, but maybe you meant hyperthyroidism?  Too much thyroid hormone? @1398days, Anxiety could be a glutening symptom.  Or you could just be concerned about your health and not sure you can control the environment to avoid gluten.  Maybe it would help if your parents spent some time reading this forum.  The Newbie101 thread might be a good place to start.  People sometimes think celiac is like a stomach bug and a minor inconvenience.  But it can be a serious health issue if untreated or ignored.  Until people are educated about it they probably will assume it isn't a real problem.  But it's a life-time condition that can kill you or degrade your quality of life.  On the other hand if you keep gluten-free and eat a healthy diet of meats, veggies, nuts and fruits, you can be fine.  Your parents will need to help you though and that means they needs to learn about your condition.  Back to school for the parental units! Getting tested is a good idea so you will "know" what is going on.  That may be important in the future because new treatments may become available.  The first test is usually a blood anti-bodies test, and then later an endoscopy to check biopsy samples for gut damage.  
  9. Just venting.....

    Hi Donna, That's no fun!   I agree with the others, check your diet again.  It's easy to make mistakes and let some gluten sneak into our diet.  Think about anything new or different you may have eaten recently that you weren't eating.  Maybe you can pinpoint something (or several things) to try eliminating. I take aspirin for pain and Pepto Bismol.  If the pain is gas then peppermint tea may help.  The pain can sure be a great motivator to change your diet eh?  Pro-biotics may help too.  I hope you get over your pain soon.  There can be a lot of back and forth symptoms when we first go gluten-free.  It takes some time for the gut to heal and the immune reaction to die down.  I understand not feeling too perky when you are in pain though.  I know I sure wasn't a happy go lucky type for a while.  Being in pain can also sap your energy and make you tired at times.  But it tends to get better over time IMHO. May the Good Lord Jesus keep you and bless you.
  10. Greetings from a newly DXed

    Hi Mike, The aspirin is for pain, although maybe you don't have that much.  It can come in handy sometimes after being glutened.  I suggest you don't drink the peppermint tea all the time, but kind of save it for when you need it.  Drink some other teas when you aren't sick, then the peppermint will have  a stronger effect when you need it.  Because your body isn't "used" to it.  Also since it  tends to relax smooth muscles, it isn't the best thing for diahrea. I remember being hungry after first going gluten-free.  It seemed like my body wanted lots of food all of a sudden.  For the recovery of your digestive system, it's not so much what you eat as what you don't eat.   You might want to cut out dairy for a while if you haven't already.  Dairy can be hard to digest when your gut is damaged.  Something else that might help is taking some pro-biotics and cutting down on sugar.  Our guts contain millions of bacteria and if they get out of whack they can create lots of problems.  Gut damage leads to bacteria imbalances and that can cause symptoms.  Bacteria love sugar and carbs and that can cause them to multiply more than is good. Meats, nuts, veggies and fruit are good,  For traveling it's good to bring your own food.   Or stay somewhere you can cook your own food.  If that doesn't work you can ask the cook to use a clean frying pan and utensils and hope for the best.  But it's a crap shoot then because most people don't have a clue what gluten is and how to avoid contamination of your food. Some restaraunts have a gluten-free menu now and you can ask about that, or check the restaraunts before you travel.  Some people take a cooler of food with them.  Or fruit and nuts.
  11. Forum Upgrade Bug Reports

    When typing a thread reply in Firefox the response is pretty slow.  FireFox 43.0.4  I don't see this issue on other forums, so think it is this site causing it.  The editing seems slow as heck.
  12. Going Dairy Free - Questions

    Hi Anyana, Lactose is a sugar in dairy.  Casein is a protein.  If you are only lactose intolerant you can buy lactase (enzyme) pills or lactase milk that would be safe for you. If you are casein intolerant that's a harder nut to crack.  Ain't a lot of help there. While you are healing it might be better to just stop all dairy for a few months and give your body a better chance to recover. You can use coconut oil as a sub for butter and it is even better for you.  There are almond milks and other milk subs available too. There are some dairy free cheese subs like Daiya brand cheese-like substance. For ice cream consider Italian ice type things. Goldenbergs Nut Chews are a dairy free candy. I never got dairy back so I guess I shouldn't have answered.  Sorry.
  13. Greetings from a newly DXed

    Welcome Mike!     I hope you make it and don't become bear chow! Hopefully you will find the Newbie 101 thread sticky.  It has some helpful tips for getting started. It's a good idea to eat really simple foods when starting out gluten-free.  The less processed food we eat, the less chance there is of getting cross-contamination and hidden gluten in our diet.  So meats, fruits, veggies, nuts are a good choice.  Or anything you make by combing them.  Spices are usually ok, but not always.  Mckormick spices are good about labeling their ingredients for gluten.  That doesn't mean they are gluten-free, but if you read the ingredient list you can find the gluten listed.   Wheat, rye, and barley are bad for us.  Oats bother some of us also, and are often cross-contaminated with gluten. It can take while to heal our insides after going gluten-free.  And even a tiny amount of gluten getting in our innards can start the immune reaction up again.  So it is good to think about not using things like shared toasters, peanut butter, etc where gluten eaters are spreading their nasty crumbs. Basically anything that you eat or drink needs to be checked for gluten.  After a while you get used to these things but it can be challenging at first. I suggest you invest in some peppermint tea and a big bottle of aspirin.  Peppermint tea helps relax the stomach muscles and makes it easier to burp gas out.  Some Pepto Bismol is good for gut pain.   Helps a little and may reduce damage a bit.  Maybe. If you like to take your lunch to work that's good.  If not, it would be a good reason to start liking to take your lunch to work.  It's not real safe to trust other people's cooking usually if they aren't trained in safe food prep for celiacs.  
  14. Here's a link to an old thread about mental symptoms in celiac disease.  It might be interesting to you.  I found it by searching for anger, depression in the forum search tool.  There are other similar subject threads too.      
  15. Hi Blue2220, The usual testing process for celiac disease is first blood tests to check for anti-bodies to gliaden( a protein in gluten).  And then an endoscopy to take 5 or so biopsy sample of the small intestine.  They check the biopsy samples for a specific type of damage that shows up sometimes in celiac disease at times, usually after the disease has progressed for a while.  In the early stages the intestinal damage may not show up though. Celiac damages the lining of the small intestine making it hard for the body to absorb nutrients (vitamins, minerals, fats, etc).  So lots of body organs are affected when that happens. Because it is auto-immune the reactions are different from a food poisoning or temporary stomach bug.  The celiac auto-immune reaction can got on for weeks to months before tapering off.  It doesn't take much gluten to start the reaction either. Once you get diagnosed and start the gluten-free diet you will be n your way to recovery.  your symptoms might match Crohn's disease or some other gastro condition also, so it is important to get tested before starting the gluten-free diet. And welcome to the forum!